New member here!

Posted March 19, 2003 · March 19, 2003

Hi Kitty. I'm from IL to. Where about in IL are you at? I'm right on the

border of Wis. Where is the rest of the IL/Wis people from? Anyone from

Arkansas?

Tabitha

In a message dated 3/19/2003 2:25:58 PM Central Standard Time,

bubbly_magic@... writes:

> Hi Lucinda and everyone Smiling and waving to every body from

> Illinois. I've been making soaps and toletries for about 1.5 years. I

> do mostly CP and a little M & P, my very supportive hubby is the

> backbone of our little business. He helps with everything we do, his

> swirls will make you drool lol.

>

> Chat soon!

> Hugs,

> Kitty

> http://www.kangarooblue.com

>

Posted March 20, 2003 · March 20, 2003

Hi Kitty, Tabitha and everyone,

I am also new to the group. I joined a couple weeks ago, but have just

been lurking and learning. I also live in Illinois. I want to learn to

make lotions and body butters for myself and family and friends for a

start and see how things go from there. This seems like a great place

to learn and people are so friendly and helpful.

Posted March 24, 2003 · March 24, 2003

Hey ,

Where are you located in Illinois? We are in Naperville

I can help answer questions on body butter, but I'm hopeless when it

comes to lotions!! The preservative is what gets me lol

Hugs,

Kitty

http://www.kangarooblue.com

> Hi Kitty, Tabitha and everyone,

> I am also new to the group. I joined a couple weeks ago, but have

just

> been lurking and learning. I also live in Illinois. I want to

learn to

> make lotions and body butters for myself and family and friends for

a

> start and see how things go from there. This seems like a great

place

> to learn and people are so friendly and helpful.

>

Posted March 24, 2003 · March 24, 2003

Hi Tabitha,

I'm in Naperville, about 45 mins from downtown Chicago.

Kitty

http://www.kangarooblue.com

~~~

> Hi Kitty. I'm from IL to. Where about in IL are you at? I'm right

on the

> border of Wis. Where is the rest of the IL/Wis people from? Anyone

from

> Arkansas?

>

> Tabitha

Posted March 24, 2003 · March 24, 2003

I'm from the Chain O'lakes area. I've lived in Round Lake, Grayslake, Lake

Villa, and Antioch. All is real close to Gurnee Mills and Great America.

I now live in Genoa City but the town is so small you need tri-focals to see

it on the map.

I'm planning on relocating to Arkansas. Is anyone in Arkansas?

Thanks,

Tabitha

In a message dated 3/24/2003 2:28:08 PM Central Standard Time,

bubbly_magic@... writes:

> Hi Tabitha,

>

> I'm in Naperville, about 45 mins from downtown Chicago.

>

> Kitty

> http://www.kangarooblue.com

>

Posted March 25, 2003 · March 25, 2003

I'm planning on relocating to Arkansas. Is anyone in Arkansas?

Thanks,

Tabitha

Hi Tabitha, I am in Arkansas!!!( Jumping up and waving my arms )

Which part of Arkansas? I am in South Central about 60 miles south of Little

Rock.

Pam

Posted March 25, 2003 · March 25, 2003

Hot Springs area. I have family there.

I would love to chat with you sometime. Email me privately if your interested

in one on one chat. I have had the hardest time finding people in Arkansas

that can tell me about it. Do you know any message boards with Ark folk?

Thanks for responding! (WAVING BACK)

Tabitha

In a message dated 3/25/2003 1:27:55 PM Central Standard Time, pamt@...

writes:

> I'm planning on relocating to Arkansas. Is anyone in Arkansas?

>

> Thanks,

> Tabitha

>

> Hi Tabitha, I am in Arkansas!!!( Jumping up and waving my arms )

> Which part of Arkansas? I am in South Central about 60 miles south of

> Little Rock.

>

> Pam

>

Posted March 26, 2003 · March 26, 2003

Hi Tabitha, Would love to chat. I am not a member of any message boards with

just Ark folks, but I would be glad to tell you anything I know. Hot Springs

is about an hour and a half from here. I don't go there very often, but I know

it is a tourist town. You will probably find lots of outlets for your hobby

there.

I work from home and operate 2 businesses. I have a sign, graphic shop and a

wholesale potpourri & candle shop. Keeps me very busy. I have been dabbling

in the bath and body stuff and experimenting on myself lately.

When do you expect to move?

Pam in Kingsland, AR

Pam

Nature's Medleys

Potpourri & More

http://www.naturesmedleys.com

Re: Re: New Member Here!

Hot Springs area. I have family there.

I would love to chat with you sometime. Email me privately if your interested

in one on one chat. I have had the hardest time finding people in Arkansas

that can tell me about it. Do you know any message boards with Ark folk?

Thanks for responding! (WAVING BACK)

Tabitha

In a message dated 3/25/2003 1:27:55 PM Central Standard Time, pamt@...

writes:

> I'm planning on relocating to Arkansas. Is anyone in Arkansas?

>

> Thanks,

> Tabitha

>

> Hi Tabitha, I am in Arkansas!!!( Jumping up and waving my arms )

> Which part of Arkansas? I am in South Central about 60 miles south of

> Little Rock.

>

> Pam

>

Posted December 11, 2007 · December 11, 2007

Hi Pat, I am a 46 year old woman with FMS. I am new to the group. Reading your story (and others in this group) have made me feel less alone. I am so glad you are writing a book-I also believe knowledge is power and I am starved for information on this "dragon".Thanks for sharing your thoughts. Beth marypat and her 8 furry friends <petfarm@...> wrote:Dominie's Support Group I suppose an introduction would be appropriate here. I know Dom and Sandie from the internet and other support groups. Hope to know

more of you in time. OK where to start? First I am a 56 old Caucasian female with FMS, CFS, MCS, CMP, GERD, IBS, migraines, panic attacks and depression (dysthymia.) I worked full time up until about 9 yrs ago, when I stopped to care for my dying father. I never went back full time because my mother was also ill and asked me to be available to her for MD appts and transportation. Now add to that the fact that I am a registered nurse of 33 years, with an extensive background in intensive care, gerontology, psychiatry at the bedside and psychiatric nursing instruction, in home health care and counseling. I primarily worked with the mentally ill population locally, but also had lots of counseling with substance abusers and women, who had been physically or mentally or emotionally abused, raped, sexually abused and/or assaulted. I did not practice nursing and counseling except for part time for over six years; I went back full time 20 months ago but now am off again due to pain and stress. I have had FMS for nearly 20 yrs, but went without diagnosis for many years because as a psych nurse, I knew what the medical and psychiatric communities thought of FMS....suffered only by unhappy, menopausal, hysterical, hypochondriacal, depressed women who were drug seekers! Well that was certainly NOT something I wanted to share with my GP. I figured they would label me and that would be the end of any complaint being taken seriously. About this same time, 1990, twice a man I scarcely knew assaulted me. Clearly this only added to my stress and pain. Late in 1998 as my father lay dying; I

had an appt with my GP. I had researched FMS due to a rather lengthy symposium I had attended dealing with women's issues. At this symposium, FMS was not made to sound like a somatoform disorder, but more like a legitimate illness with few if any medical tests to prove it existed. But the psych community WAS more receptive and the ACR (American College of Rheumatology) had devised the tender point examination as one way of ascertaining the disorder's presence. I took volumes of info to my GP. She was very kind and shocked that she had missed my diagnosis for many years. Clearly I had FMS and the associated disorders. I was quickly sent to a rheumy who confirmed the diagnosis. Meds were ordered and adjusted and eliminated

and added, you know the routine....until finally with my input and backed by research, I was allowed to set my own course and manage my illness quite successfully under my MD's supervision. ly, I know more than they do and they admit it. I am fairly well controlled now but cannot work full time due to pain and fibro fog and the use of opiate therapy for the worst pain. I recently had MRIs done on my neck and lower spine~~~they found bone spurs, bulging discs, degeneration of the discs, and stenosis of the areas. I filed for SSD but was denied, no shock. Can't go through all of it again just yet. I have spent over nine years doing research nearly every day with the hopes of writing a book similar to Devin Starlanyl and Ellen Copeland's masterpiece. I had nearly 10,000 articles saved. I had over 375 interviews done and ready to go to the statistical analyst at the university when my CD burner died with the info inside it!!! Damn the bad luck! Guess it just wasn't meant to be at least not at that time. Anyway, the research goes on. They say they cannot isolate a cause but I think if we each look deeply enough, we can isolate a reason the DRAGON took over our lives, holds many of us hostage and keeps us from being the persons we once were. JMHO. I think we owe it to ourselves to be proactive in our care and know all we can about our illnesses and psychosocial problems inherent in this. My feeling is that knowledge is power and the more we know the better off we are when talking to our MD' s. NO MD knows all things about all things. We sometimes have to help educate our doctors about current findings in FMS in order to get the best possible care. If we go in like gangbusters, chances are we will be labeled as troublemakers and tossed aside.

But if we go in prepared with proper questions and have a head's up on the answers, we WILL get the care and respect we deserve. So to end this little novella, let me just say I am a nurse, a counselor, a FMS sufferer, and a well read researcher preparing to author a book on what ails us. It seems we suffer many of the same troubles and we can help one another if we band together. I really appreciate being permitted to join your group. All my love and support always!

Gentle (((((hugs)))) Pat aka Fibronurse Petfarm@... Pain is a part of being alive, and we need to learn that. Pain does not last forever, nor is it necessarily unbeatable, and we need to be taught that. hugs, Pat aka Fibronurse "I am careful not to confuse excellence with perfection. Excellence, I can reach for; perfection is God's business." - J. Fox

Never miss a thing. Make your homepage.

Posted December 11, 2007 · December 11, 2007

Hi Pat

Very well put. I am also proactive. I keep my gp updated with the

latest info. I was told he was fibro aware when I started seeing him

Jan 2005. I think he is only as aware as I make him. I have

considered writing a book on my experience with fm. I have had

symptoms back to age 16, maybe further. I am 52. One of my 2

daughters has fm and some of my sisters. My mom (deceased) was

labeled a hypochondriac cos she was always in pain with no reason,

she had fm. I have tons of info to share if I can help you put your

files back together. I work full time and interact with my 10 gkids

and my 2nd husband of 3 years. Writing a book for me will come in my

later years. The only pains meds I take are otc. My prescription meds

are Nexium for acid reflux and allergy meds. The supplements I take

are vitamins and minerals.

What is JMHO?

>

> Dominie's Support GroupI suppose an introduction would be

appropriate here. I know Dom and Sandie from the internet and other

support groups. Hope to know more of you in time.

>

> OK where to start? First I am a 56 old Caucasian female with

FMS, CFS, MCS, CMP, GERD, IBS, migraines, panic attacks and

depression (dysthymia.) I worked full time up until about 9 yrs ago,

when I stopped to care for my dying father. I never went back full

time because my mother was also ill and asked me to be available to

her for MD appts and transportation. Now add to that the fact that I

am a registered nurse of 33 years, with an extensive background in

intensive care, gerontology, psychiatry at the bedside and

psychiatric nursing instruction, in home health care and counseling.

I primarily worked with the mentally ill population locally, but also

had lots of counseling with substance abusers and women, who had been

physically or mentally or emotionally abused, raped, sexually abused

and/or assaulted. I did not practice nursing and counseling except

for part time for over six years; I went back full time 20 months ago

but now am off again due to pain and stress.

>

> I have had FMS for nearly 20 yrs, but went without diagnosis for

many years because as a psych nurse, I knew what the medical and

psychiatric communities thought of FMS....suffered only by unhappy,

menopausal, hysterical, hypochondriacal, depressed women who were

drug seekers! Well that was certainly NOT something I wanted to share

with my GP. I figured they would label me and that would be the end

of any complaint being taken seriously. About this same time, 1990,

twice a man I scarcely knew assaulted me. Clearly this only added to

my stress and pain.

>

> Late in 1998 as my father lay dying; I had an appt with my GP. I

had researched FMS due to a rather lengthy symposium I had attended

dealing with women's issues. At this symposium, FMS was not made to

sound like a somatoform disorder, but more like a legitimate illness

with few if any medical tests to prove it existed. But the psych

community WAS more receptive and the ACR (American College of

Rheumatology) had devised the tender point examination as one way of

ascertaining the disorder's presence. I took volumes of info to my

GP. She was very kind and shocked that she had missed my diagnosis

for many years. Clearly I had FMS and the associated disorders. I

was quickly sent to a rheumy who confirmed the diagnosis. Meds were

ordered and adjusted and eliminated and added, you know the

routine....until finally with my input and backed by research, I was

allowed to set my own course and manage my illness quite successfully

under my MD's supervision. ly, I know more than they do and

they admit it. I am fairly well controlled now but cannot work full

time due to pain and fibro fog and the use of opiate therapy for the

worst pain. I recently had MRIs done on my neck and lower

spine~~~they found bone spurs, bulging discs, degeneration of the

discs, and stenosis of the areas. I filed for SSD but was denied, no

shock. Can't go through all of it again just yet.

>

> I have spent over nine years doing research nearly every day with

the hopes of writing a book similar to Devin Starlanyl and Ellen

Copeland's masterpiece. I had nearly 10,000 articles saved. I had

over 375 interviews done and ready to go to the statistical analyst

at the university when my CD burner died with the info inside it!!!

Damn the bad luck! Guess it just wasn't meant to be at least not at

that time. Anyway, the research goes on. They say they cannot

isolate a cause but I think if we each look deeply enough, we can

isolate a reason the DRAGON took over our lives, holds many of us

hostage and keeps us from being the persons we once were. JMHO. I

think we owe it to ourselves to be proactive in our care and know all

we can about our illnesses and psychosocial problems inherent in

this. My feeling is that knowledge is power and the more we know the

better off we are when talking to our MD' s. NO MD knows all things

about all things. We sometimes have to help educate our doctors

about current findings in FMS in order to get the best possible

care. If we go in like gangbusters, chances are we will be labeled

as troublemakers and tossed aside. But if we go in prepared with

proper questions and have a head's up on the answers, we WILL get the

care and respect we deserve.

>

> So to end this little novella, let me just say I am a nurse, a

counselor, a FMS sufferer, and a well read researcher preparing to

author a book on what ails us. It seems we suffer many of the same

troubles and we can help one another if we band together. I really

appreciate being permitted to join your group.

>

> All my love and support always!

>

> Gentle (((((hugs))))

>

> Pat aka Fibronurse

>

> Petfarm@...

>

> Pain is a part of being alive, and we need to learn that. Pain

does not last forever, nor is it necessarily unbeatable, and we need

to be taught that.

>

> hugs,

>

> Pat aka Fibronurse

>

> " I am careful not to confuse excellence with perfection.

Excellence, I can reach for; perfection is God's business. " -

J. Fox

>

Posted December 11, 2007 · December 11, 2007

Hi Pat. So good see you. Sandie -- new member here! I suppose an introduction would be appropriate here. I know Dom and Sandie from the internet and other support groups. Hope to know more of you in time. OK where to start? First I am a 56 old Caucasian female with FMS, CFS, MCS, CMP, GERD, IBS, migraines, panic attacks and depression (dysthymia.) I worked full time up until about 9 yrs ago, when I stopped to care for my dying father. I never went back full time because my mother was also ill and asked me to be available to her for MD appts and transportation. Now add to that the fact that I am a registered nurse of 33 years, with an extensive background in intensive care, gerontology, psychiatry at the bedside and psychiatric nursing instruction, in home health care and counseling. I primarily worked with the mentally ill population locally, but also had lots of counseling with substance abusers and women, who had been physically or mentally or emotionally abused, raped, sexually abused and/or assaulted. I did not practice nursing and counseling except for part time for over six years; I went back full time 20 months ago but now am off again due to pain and stress. I have had FMS for nearly 20 yrs, but went without diagnosis for many years because as a psych nurse, I knew what the medical and psychiatric communities thought of FMS....suffered only by unhappy, menopausal, hysterical, hypochondriacal, depressed women who were drug seekers! Well that was certainly NOT something I wanted to share with my GP. I figured they would label me and that would be the end of any complaint being taken seriously. About this same time, 1990, twice a man I scarcely knew assaulted me. Clearly this only added to my stress and pain. Late in 1998 as my father lay dying; I had an appt with my GP. I had researched FMS due to a rather lengthy symposium I had attended dealing with women's issues. At this symposium, FMS was not made to sound like a somatoform disorder, but more like a legitimate illness with few if any medical tests to prove it existed. But the psych community WAS more receptive and the ACR (American College of Rheumatology) had devised the tender point examination as one way of ascertaining the disorder's presence. I took volumes of info to my GP. She was very kind and shocked that she had missed my diagnosis for many years. Clearly I had FMS and the associated disorders. I was quickly sent to a rheumy who confirmed the diagnosis. Meds were ordered and adjusted and eliminated and added, you know the routine....until finally with my input and backed by research, I was allowed to set my own course and manage my illness quite successfully under my MD's supervision. ly, I know more than they do and they admit it. I am fairly well controlled now but cannot work full time due to pain and fibro fog and the use of opiate therapy for the worst pain. I recently had MRIs done on my neck and lower spine~~~they found bone spurs, bulging discs, degeneration of the discs, and stenosis of the areas. I filed for SSD but was denied, no shock. Can't go through all of it again just yet. I have spent over nine years doing research nearly every day with the hopes of writing a book similar to Devin Starlanyl and Ellen Copeland's masterpiece. I had nearly 10,000 articles saved. I had over 375 interviews done and ready to go to the statistical analyst at the university when my CD burner died with the info inside it!!! Damn the bad luck! Guess it just wasn't meant to be at least not at that time. Anyway, the research goes on. They say they cannot isolate a cause but I think if we each look deeply enough, we can isolate a reason the DRAGON took over our lives, holds many of us hostage and keeps us from being the persons we once were. JMHO. I think we owe it to ourselves to be proactive in our care and know all we can about our illnesses and psychosocial problems inherent in this. My feeling is that knowledge is power and the more we know the better off we are when talking to our MD' s. NO MD knows all things about all things. We sometimes have to help educate our doctors about current findings in FMS in order to get the best possible care. If we go in like gangbusters, chances are we will be labeled as troublemakers and tossed aside. But if we go in prepared with proper questions and have a head's up on the answers, we WILL get the care and respect we deserve. So to end this little novella, let me just say I am a nurse, a counselor, a FMS sufferer, and a well read researcher preparing to author a book on what ails us. It seems we suffer many of the same troubles and we can help one another if we band together. I really appreciate being permitted to join your group. All my love and support always! Gentle (((((hugs)))) Pat aka Fibronurse Petfarm@... Pain is a part of being alive, and we need to learn that. Pain does not last forever, nor is it necessarily unbeatable, and we need to be taught that. hugs, Pat aka Fibronurse "I am careful not to confuse excellence with perfection. Excellence, I can reach for; perfection is God's business." - J. Fox LM~CmasPresent_kk Head prepared by Sweet Letter by Puck Just for fun and personal use only October 7, 2007 Font AuntJudy

Posted December 11, 2007 · December 11, 2007

Hi I have just about everything that you have and i was beaten as a child and sexually assulted twice and no one has talk to me about that and i know that it part of my problems. I see a psychologist but he is teaching me how to live with the pain. No one to talk to about the other though. Well anyway welcome to our humble group. we are all talking together and it sure is great to talk to someone that is a fibromite like me. marypat and her 8 furry friends <petfarm@...> wrote: I suppose an introduction would be appropriate here. I know Dom and Sandie from the internet and other support groups. Hope to know more of you in time. OK where to start? First I am a 56 old Caucasian female with FMS, CFS, MCS, CMP, GERD, IBS, migraines, panic attacks and depression (dysthymia.)

I worked full time up until about 9 yrs ago, when I stopped to care for my dying father. I never went back full time because my mother was also ill and asked me to be available to her for MD appts and transportation. Now add to that the fact that I am a registered nurse of 33 years, with an extensive background in intensive care, gerontology, psychiatry at the bedside and psychiatric nursing instruction, in home health care and counseling. I primarily worked with the mentally ill population locally, but also had lots of counseling with substance abusers and women, who had been physically or mentally or emotionally abused, raped, sexually abused and/or assaulted. I did not practice nursing and counseling except for part time for over six years; I went back full time 20 months ago but now am off again due to pain and stress. I have had FMS for nearly 20 yrs, but went without diagnosis for many years because as a psych nurse, I knew what the medical and psychiatric communities thought of FMS....suffered only by unhappy, menopausal, hysterical, hypochondriacal, depressed women who were drug seekers! Well that was certainly NOT something I wanted to share with my GP. I figured they would label me and that would be the end of any complaint being taken seriously. About this same time, 1990, twice a man I scarcely knew assaulted me. Clearly this only added to my stress and pain.

Late in 1998 as my father lay dying; I had an appt with my GP. I had researched FMS due to a rather lengthy symposium I had attended dealing with women's issues. At this symposium, FMS was not made to sound like a somatoform disorder, but more like a legitimate illness with few if any medical tests to prove it existed. But the psych community WAS more receptive and the ACR (American College of Rheumatology) had devised the tender point examination as one way of ascertaining the disorder's

presence. I took volumes of info to my GP. She was very kind and shocked that she had missed my diagnosis for many years. Clearly I had FMS and the associated disorders. I was quickly sent to a rheumy who confirmed the diagnosis. Meds were ordered and adjusted and eliminated and added, you know the routine....until finally with my input and backed by research, I was allowed to set my own course and manage my illness quite successfully under my MD's supervision. ly, I know more than they do and they admit it. I am fairly well controlled now but cannot work full time due to pain and fibro fog and the use of opiate therapy for the worst pain. I recently had MRIs done on my neck and lower spine~~~they found bone spurs, bulging discs, degeneration of the discs, and stenosis of the areas. I filed for SSD but

was denied, no shock. Can't go through all of it again just yet. I have spent over nine years doing research nearly every day with the hopes of writing a book similar to Devin Starlanyl and Ellen Copeland's masterpiece. I had nearly 10,000 articles saved. I had over 375 interviews done and ready to go to the statistical analyst at the university when my CD burner died with the info inside it!!! Damn the bad luck! Guess it just wasn't meant to be at least not at that

time. Anyway, the research goes on. They say they cannot isolate a cause but I think if we each look deeply enough, we can isolate a reason the DRAGON took over our lives, holds many of us hostage and keeps us from being the persons we once were. JMHO. I think we owe it to ourselves to be proactive in our care and know all we can about our illnesses and psychosocial problems inherent in this. My feeling is that knowledge is power and the more we know the better off we are when talking to our MD' s. NO MD knows all things about all things. We sometimes have to help educate our doctors about current findings in FMS in order to get the best possible care. If we go in like gangbusters, chances are we will be labeled as troublemakers and tossed aside. But if we go in prepared with proper questions

and have a head's up on the answers, we WILL get the care and respect we deserve. So to end this little novella, let me just say I am a nurse, a counselor, a FMS sufferer, and a well read researcher preparing to author a book on what ails us. It seems we suffer many of the same troubles and we can help one another if we band together. I really appreciate being permitted to join your group. All my love and support always! Gentle (((((hugs)))) Pat aka Fibronurse Petfarmcomcast (DOT) net Pain is a part of being alive, and we need to learn that. Pain does not last forever, nor is it necessarily unbeatable, and we need to be taught that.

hugs, Pat aka Fibronurse "I am careful not to confuse excellence with perfection. Excellence, I can reach for; perfection is God's business." - J. Fox

Posted December 12, 2007 · December 12, 2007

Hi ,I'm surprised you didn't get on disability with all that you suffer from. I would urge you to appeal and re-apply. I don't know what state you are in but I'd be more than happy to help you through the process. I got disability the first time around with help from other younger women who had as well. It's all about how much you write and what you say. I sent in 35 pages of typed material with my application and the response to their questionaires. Plus I mentioned depression and how that affects my life. You just have to know how to work the system but you can get it and you definitely should have it. Let me know if I can help. (

infinite242@...).Whitney :)On Dec 11, 2007 3:52 PM, marypat and her 8 furry friends <petfarm@...

> wrote:

I suppose an introduction would be appropriate here. I know Dom and Sandie from the internet and other support groups. Hope to know more of you in time.

OK where to start? First I am a 56 old Caucasian female with FMS, CFS, MCS, CMP, GERD, IBS, migraines, panic attacks and depression (dysthymia.) I worked full time up until about 9 yrs ago, when I stopped to care for my dying father. I never went back full time because my mother was also ill and asked me to be available to her for MD appts and transportation. Now add to that the fact that I am a registered nurse of 33 years, with an extensive background in intensive care, gerontology, psychiatry at the bedside and psychiatric nursing instruction, in home health care and counseling. I primarily worked with the mentally ill population locally, but also had lots of counseling with substance abusers and women, who had been physically or mentally or emotionally abused, raped, sexually abused and/or assaulted. I did not practice nursing and counseling except for part time for over six years; I went back full time 20 months ago but now am off again due to pain and stress.

I have had FMS for nearly 20 yrs, but went without diagnosis for many years because as a psych nurse, I knew what the medical and psychiatric communities thought of FMS....suffered only by unhappy, menopausal, hysterical, hypochondriacal, depressed women who were drug seekers! Well that was certainly NOT something I wanted to share with my GP. I figured they would label me and that would be the end of any complaint being taken seriously. About this same time, 1990, twice a man I scarcely knew assaulted me. Clearly this only added to my stress and pain.

Late in 1998 as my father lay dying; I had an appt with my GP. I had researched FMS due to a rather lengthy symposium I had attended dealing with women's issues. At this symposium, FMS was not made to sound like a somatoform disorder, but more like a legitimate illness with few if any medical tests to prove it existed. But the psych community WAS more receptive and the ACR (American College of Rheumatology) had devised the tender point examination as one way of ascertaining the disorder's presence. I took volumes of info to my GP. She was very kind and shocked that she had missed my diagnosis for many years. Clearly I had FMS and the associated disorders. I was quickly sent to a rheumy who confirmed the diagnosis. Meds were ordered and adjusted and eliminated and added, you know the routine....until finally with my input and backed by research, I was allowed to set my own course and manage my illness quite successfully under my MD's supervision. ly, I know more than they do and they admit it. I am fairly well controlled now but cannot work full time due to pain and fibro fog and the use of opiate therapy for the worst pain. I recently had MRIs done on my neck and lower spine~~~they found bone spurs, bulging discs, degeneration of the discs, and stenosis of the areas. I filed for SSD but was denied, no shock. Can't go through all of it again just yet.

I have spent over nine years doing research nearly every day with the hopes of writing a book similar to Devin Starlanyl and Ellen Copeland's masterpiece. I had nearly 10,000 articles saved. I had over 375 interviews done and ready to go to the statistical analyst at the university when my CD burner died with the info inside it!!! Damn the bad luck! Guess it just wasn't meant to be at least not at that time. Anyway, the research goes on. They say they cannot isolate a cause but I think if we each look deeply enough, we can isolate a reason the DRAGON took over our lives, holds many of us hostage and keeps us from being the persons we once were. JMHO. I think we owe it to ourselves to be proactive in our care and know all we can about our illnesses and psychosocial problems inherent in this. My feeling is that knowledge is power and the more we know the better off we are when talking to our MD' s. NO MD knows all things about all things. We sometimes have to help educate our doctors about current findings in FMS in order to get the best possible care. If we go in like gangbusters, chances are we will be labeled as troublemakers and tossed aside. But if we go in prepared with proper questions and have a head's up on the answers, we WILL get the care and respect we deserve.

So to end this little novella, let me just say I am a nurse, a counselor, a FMS sufferer, and a well read researcher preparing to author a book on what ails us. It seems we suffer many of the same troubles and we can help one another if we band together. I really appreciate being permitted to join your group.

All my love and support always!

Gentle (((((hugs))))

Pat aka Fibronurse

Petfarm@...

Pain is a part of being alive, and we need to learn that. Pain does not last forever, nor is it necessarily unbeatable, and we need to be taught that.

hugs,

Pat aka Fibronurse

" I am careful not to confuse excellence with perfection. Excellence, I can reach for; perfection is God's business. " - J. Fox

-- Eat, sleep, dream and be the music!Life is short, live each day to its' fullest!Cave softly and leave no trace.Find a cure for chronic pain!Ask about The Purrfect Petsitter and Infinite Creations!

Posted May 14, 2008 · May 14, 2008

Welcome Kim and Little Maggie!

I too have a Maggie but she will be 11 in June. She was diagnosed one year

ago after a huge flare up when all of her symptoms showed themselves and there

was no denying what was going on!

Maggie also has OI(Brittle bone disease), this is where I can relate to the

" If you just give her MORE milk and calcium it will get better. If only that

were true there would be hundreds of people that have OI greatly relieved at

such an easy way to stop breaking bones. Sadly though it's not that easy.

Being a nurse myself, I was still given advice of all sorts when my Maggie was

first diagnosed with JIA. What I have come to find out over the last year, it

doesn't matter if there are tornado's or sunshine, if she eats berries or drinks

her milk, if she is going to have a flare up there doesn't seem to be any rhyme

or reason. The best advice we have been given besides the stuff we get from her

Pediatric Rheumatologist, is right here in this group! But as in all diseases,

what works for one does not always work for another. There is always that chance

though that it will and by asking questions possibly you will run across that

one person with all of the right answers.

We still have a long way to go with my Maggie. She is on massive doses of

steroids and Methotrexate along with a whole lot of other stuff for other

diagnosis's. I can say though that the Methotrexate injections gives her no side

effects. It is the steroids that we have learned to love and hate equally.

Stand your ground with your daughter, you are her best advocate!! You will get

a whole lot more advice I am sure! No one knows your child better than you do!

Smiles and Sunshine from Iowa!

Diane and Maggie age 10 (OI,CP,Systemic JIA,UVEITIS)

> From: Kim <kimberlyoroot@...>

> Subject: New member here!

>

> Date: Wednesday, May 14, 2008, 6:18 PM

> Hi everyone!

>

> I joined the group a few weeks ago (thanks so much for the

> invite,

> Terri!) but I've just been reading and lurking so far.

> But I wanted

> to take a minute to introduce myself. I'm Kim, and my

> 3-year-old

> daughter, Maggie, was diaganosed with juvenile arthritis in

> December.

> She has it mostly on her left side .. a toe, a few fingers

> and her

> ankle, but also in her neck and today we learned her right

> kneww is

> swollen. She was on oral methotrexate for a while, but it

> didn't seem

> to be working, so she's been on injectibles for two

> months.

>

> Until the swollen knee popped up, I really thought she was

> doing a

> lot better. Her neck hasn't gotten stiff in over three

> weeks (this

> had become our biggest issue). She had cortisone shots in

> her ankle

> and one finger in February and the swelling in those joints

> has

> stayed down, thank goodness.

>

> Her ped. rheumatologist wants to give the injectible mc a

> few more

> months and if we don't see improvement in the knee,

> possibly add

> Enbrel. I really hope it doesn't come to that!

>

> I do have one question for you all. Do you have people in

> your lives

> who are always second-guessing you? My step-mom is a nurse,

> and one

> of her daughters has a lot of allergies. She seems to think

> that all

> Maggie's probably are allergy based and that if I just

> eliminated

> milk, the arthritis goes away. She drive me crazy because

> she's

> always sending my articles that relate to adult arthritis,

> not

> juvenile. And I know she disagrees with my and my

> husband's decision

> to start methotrexate.

>

> I'm not discounting allergies (I did try eliminating

> tomato products

> and that had no effect), but Maggie has such a limited diet

> (being

> only three), there's only so much I want to take away

> from her. Could

> milk really be a culprit?

>

> I know this post is long, but it's just so good to know

> I've found a

> place where people will understand what I'm going

> through.

>

> Kim

Posted May 14, 2008 · May 14, 2008

Hi Kim - Welcome!

I will try to keep this short.

I have some experience with "well-meaning" family members, and I have found what works best is to:

1. Listen respectfully

2. Don't engage in a debate

3. Thank them for their concern

4. Acknowledge that they love and care for your child just as you do

5. Tell them you will be happy to discuss their concerns with your child's doctors

6. Then just change the subject

This method keeps the peace in the family, makes them feel a part of the process, and reminds you that they really are trying to help, even though they are slightly irritating and not very helpful!

I have avoided many conflicts this way and it keeps my energy directed in a positive light instead of getting sidetracked with negativity.

Best of luck,

Posted May 14, 2008 · May 14, 2008

LOL ...

I love your approach!!

I get soooooo annoyed with people like this that want to 'cure' me with carrots and whatever. I have a hard time suppressing my sarcasm in hopes that they will see how STUPID their suggestions are! But it doesn't seem to work... lol..

Like Maggies mom, I have said things like, Well if it were that easy, no one would have this disease! But your approach is much more agreeable/... at least for dealing with people of the sort...

Issadora

On Wed, May 14, 2008 at 4:26 PM, nancyslauson <nancyslauson@...> wrote:

Hi Kim - Welcome!

I will try to keep this short.

I have some experience with " well-meaning " family members, and I have found what works best is to:

1. Listen respectfully

2. Don't engage in a debate

3. Thank them for their concern

4. Acknowledge that they love and care for your child just as you do

5. Tell them you will be happy to discuss their concerns with your child's doctors

6. Then just change the subject

This method keeps the peace in the family, makes them feel a part of the process, and reminds you that they really are trying to help, even though they are slightly irritating and not very helpful!

I have avoided many conflicts this way and it keeps my energy directed in a positive light instead of getting sidetracked with negativity.

Best of luck,

-- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow...

Posted May 14, 2008 · May 14, 2008

Thank

you, Issadora.

Life

is too short to spend time debating people who just plainly don’t understand.

From:

[mailto: ] On Behalf Of Issadora

Sent: Wednesday, May 14, 2008 4:32 PM

Subject: Re: Re: New member here!

LOL ...

I love your approach!!

I get soooooo annoyed with people like this that want to

'cure' me with carrots and whatever. I have a hard time suppressing my sarcasm

in hopes that they will see how STUPID their suggestions are! But it doesn't

seem to work... lol..

Like Maggies mom, I have said things like, Well if it were that easy, no one

would have this disease!

But your approach is much more agreeable/... at least for dealing with people

of the sort...

Issadora

On Wed, May 14, 2008 at 4:26 PM, nancyslauson <nancyslauson@...> wrote:

Hi Kim - Welcome!

I will try to keep this shortError! Filename not

specified..

I have some experience with

" well-meaning " family members, and I have found what works best is

to:

1. Listen respectfully

2. Don't engage in a debate

3. Thank them for their concern

4. Acknowledge that they love and care for your

child just as you do

5. Tell them you will be happy to discuss their

concerns with your child's doctors

6. Then just change the subject

This method keeps the peace in the family, makes

them feel a part of the process, and reminds you that they really are trying to

help, even though they are slightly irritating and not very helpful!

I have avoided many conflicts this way and it keeps

my energy directed in a positive light instead of getting sidetracked with

negativity.

Best of luck,

--

" Life- Like the flutter of wings... feel your hollow wings

rushing... " (AFI- Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is

within me awaiting to find a space to find it's flow...

No virus found in this incoming message.

Checked by AVG.

Version: 7.5.524 / Virus Database: 269.23.16/1431 - Release Date: 5/13/2008

7:55 PM

No virus found in this outgoing message.

Checked by AVG.

Version: 7.5.524 / Virus Database: 269.23.16/1431 - Release Date: 5/13/2008 7:55 PM

Posted May 14, 2008 · May 14, 2008

I I do not think that milkit has anything to do with autoimmune disorders if so then everyone would have one or more. I know what it is like to have everyone telling you different things just do what is best for your child and what makes her life a little easier. Slauson <nancyslauson@...> wrote: Thank you, Issadora. Life is too short to spend time debating people who just plainly don’t understand. From: [mailto: ] On Behalf Of IssadoraSent: Wednesday, May 14, 2008 4:32 PM Subject: Re: Re: New member here! LOL ... I love your approach!! I get soooooo annoyed with people like this that want to 'cure' me with carrots and whatever. I have a hard time suppressing my sarcasm in hopes that they will see how STUPID their suggestions are! But it doesn't seem to work... lol.. Like Maggies mom, I have said things like, Well if it were that easy, no one would have this disease! But your approach is much more agreeable/... at least for dealing with people of the sort... Issadora On Wed, May 14, 2008 at 4:26 PM, nancyslauson <nancyslauson > wrote: Hi Kim - Welcome! I will try to keep this shortError! Filename not specified.. I have some experience with "well-meaning" family members, and I have found what works best is to: 1. Listen respectfully 2. Don't engage in a debate 3. Thank them for their concern 4. Acknowledge that they love and care for your child just as you do 5. Tell them you will be happy to discuss their concerns with your child's doctors 6. Then just change the subject This method keeps the peace in the family, makes them feel a part of the process, and reminds you that they really are trying to help, even though they are

slightly irritating and not very helpful! I have avoided many conflicts this way and it keeps my energy directed in a positive light instead of getting sidetracked with negativity. Best of luck, -- "Life- Like the flutter of wings... feel your hollow wings rushing..." (AFI- Silver and Cold).my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow... No virus found in this incoming message.Checked by AVG.Version: 7.5.524 / Virus Database: 269.23.16/1431 - Release Date: 5/13/2008 7:55

PM No virus found in this outgoing message.Checked by AVG.Version: 7.5.524 / Virus Database: 269.23.16/1431 - Release Date: 5/13/2008 7:55 PM

Posted May 14, 2008 · May 14, 2008

What wonderful advice! I'm going to keep your email...it is so helpful!! and Rob 19 JAS Re: New member here! > > Hi Kim - Welcome!> > I will try to keep this short [] .> > I have some experience with "well-meaning" family members, and I have> found what works best is to:> > 1. Listen respectfully> > 2. Don't engage in a debate> > 3. Thank them for their concern> > 4. Acknowledge that they love and care for your child just as > you do> > 5. Tell them you will be happy to discuss their concerns with your> child's doctors> > 6. Then just change the subject> > This method keeps the peace in the family, makes them feel a > part of the> process, and reminds you that they really are trying to help, even> though they are slightly irritating and not very helpful!> > I have avoided many conflicts this way and it keeps my energy directed> in a positive light instead of getting sidetracked with negativity.> > Best of luck,> > > >

Posted May 15, 2008 · May 15, 2008

,

I enjoyed your response too! My mother in law informed me that I was not feeding Ruth right when we told her she was diagnosed with JRA. It was all I could do to be polite. I thought, then we all should have it because we all eat together!

She's well meaning, but......

Katy

From: FlyfreeIzzie@...Date: Wed, 14 May 2008 16:32:17 -0700Subject: Re: Re: New member here!

LOL ...

I love your approach!!

I get soooooo annoyed with people like this that want to 'cure' me with carrots and whatever. I have a hard time suppressing my sarcasm in hopes that they will see how STUPID their suggestions are! But it doesn't seem to work... lol..

Like Maggies mom, I have said things like, Well if it were that easy, no one would have this disease! But your approach is much more agreeable/... at least for dealing with people of the sort...

Issadora

On Wed, May 14, 2008 at 4:26 PM, nancyslauson <nancyslauson > wrote:

Hi Kim - Welcome!

I will try to keep this short.

I have some experience with "well-meaning" family members, and I have found what works best is to:

1. Listen respectfully

2. Don't engage in a debate

3. Thank them for their concern

4. Acknowledge that they love and care for your child just as you do

5. Tell them you will be happy to discuss their concerns with your child's doctors

6. Then just change the subject

This method keeps the peace in the family, makes them feel a part of the process, and reminds you that they really are trying to help, even though they are slightly irritating and not very helpful!

I have avoided many conflicts this way and it keeps my energy directed in a positive light instead of getting sidetracked with negativity.

Best of luck,

-- "Life- Like the flutter of wings... feel your hollow wings rushing..." (AFI- Silver and Cold).my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow...

Stay in touch when you're away with Windows Live Messenger. IM anytime you're online.

Posted May 15, 2008 · May 15, 2008

I am sorry you are dealing with a tough relative. Knock on wood,

I haven’t had to deal with this type of reaction yet.

As for milk, the only benefit you might see by changing to Soy

or Rice milk would be with mucous. We eliminated milk from Zoe’s

diet as part of our program with the Naturopath, but she said it had nothing to

do with the JRA or swelling issues, it was to help with her immune response

because having her sinus full of mucous all the time was making her more

susceptible to picking up germs and allergens. We have seen a difference in

the number of colds that have gone around her classroom that she has NOT gotten

since we removed milk in January. She also had a little better allergy

season.

All my best.

Joann

From:

[mailto: ] On Behalf Of Kim

Sent: Wednesday, May 14, 2008 2:19 PM

Subject: New member here!

Hi everyone!

I joined the group a few weeks ago (thanks so much for the invite,

Terri!) but I've just been reading and lurking so far. But I wanted

to take a minute to introduce myself. I'm Kim, and my 3-year-old

daughter, Maggie, was diaganosed with juvenile arthritis in December.

She has it mostly on her left side .. a toe, a few fingers and her

ankle, but also in her neck and today we learned her right kneww is

swollen. She was on oral methotrexate for a while, but it didn't seem

to be working, so she's been on injectibles for two months.

Until the swollen knee popped up, I really thought she was doing a

lot better. Her neck hasn't gotten stiff in over three weeks (this

had become our biggest issue). She had cortisone shots in her ankle

and one finger in February and the swelling in those joints has

stayed down, thank goodness.

Her ped. rheumatologist wants to give the injectible mc a few more

months and if we don't see improvement in the knee, possibly add

Enbrel. I really hope it doesn't come to that!

I do have one question for you all. Do you have people in your lives

who are always second-guessing you? My step-mom is a nurse, and one

of her daughters has a lot of allergies. She seems to think that all

Maggie's probably are allergy based and that if I just eliminated

milk, the arthritis goes away. She drive me crazy because she's

always sending my articles that relate to adult arthritis, not

juvenile. And I know she disagrees with my and my husband's decision

to start methotrexate.

I'm not discounting allergies (I did try eliminating tomato products

and that had no effect), but Maggie has such a limited diet (being

only three), there's only so much I want to take away from her. Could

milk really be a culprit?

I know this post is long, but it's just so good to know I've found a

place where people will understand what I'm going through.

Kim

Posted May 15, 2008 · May 15, 2008

I'd agree with the whole milk thing - my son's allergic to milk, but removing that from his diet eliminated his asthma/eczema type symptoms, and stopped the constant infections he used to have, but it didn't affect the JIA at all.Clair From: joann@...Date: Thu, 15 May 2008 10:02:55 -0400Subject: RE: New member here!